EPIDERMOID BRAIN TUMOR SOCIETY
EBTS as a brain tumor support organization is a small patient group compared to the more common brain tumors. First, the epidermoid is a skull base brain tumor and second, we are very rare, occurring as only .02 – 1.8% of all brain tumors diagnosed in a year. Many EBTS individuals have never met another patient with the same brain tumor! At the time of the first support group founded by two patients diagnosed with the epidermoid brain tumor, there had been no information or support available for the benign, congenital, and rare epidermoid. This patient group was started as an email list in 1999 and later became an on line group sharing knowledge and experience. With difficulties of server website maintenance, the first organization struggled for many years. During this period, supportive members of the email list came to the conclusion that a new direction should begin. Thus the formation of a new organization with a new direction was formed solely to seek funding for specific epidermoid research, awareness, education, and for professional maintenance of the organization website. EBTS was launched May 1, 2012. IRS status as a 501(c)3 was obtained December 2012.
Interaction with other epidermoid patients is an important part of EBTS organization. Posted on EBTS webpage are stories from patients, caregivers, family members, and friends providing knowledge and encouragement. These stories provide insight onto the lives of patients with challenges. EBTS Facebook also works as a support system with its daily postings from members and friends. We encourage you to join us. https://www.facebook.com/groups/epidermoidbraintumorsociety
With EBTS’s patient knowledge of the epidermoid brain tumor and its destructive growth in the skull base, research has become a priority of the EBTS organization. Many patients have had more than one surgery and a few have had as many as six. These surgeries take a toll on the patient’s quality of life. Outcomes for successful surgery even with the technical improvements are variable. There is a need for research, and this is what the next step is all about for the Epidermoid Brain Tumor Society. EBTS is united in the belief that research will make the difference in the lives of those affected by this destructive brain tumor. Join us in our mission to educate, support, and seek research.